Category Archives: Abuse

Deliberately stressing me out is, at this point, assault.

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That’s how I see it anyway.  I don’t mean disagreeing with me.  Anyone who wants to disagree with me can disagree with me as much as they want to.  I’m talking about personal attacks, and you people know who you are by now.

I have severe adrenal insufficiency.  For those who don’t know what that means, it means that my body is not making cortisol.  I have to replace all of my cortisol with a steroid called dexamethasone, and I will be on dexamethasone for the rest of my life.

Cortisol is one of the hormones that is called a stress hormone, meaning it gets used when you are under physical or emotional stress.  This means that people with adrenal insufficiency have to be extremely careful when our bodies or emotions are under extra stress.

For instance, I recently had aspiration pneumonia requiring antibiotics.  This means I had to triple my dose of dexamethasone to avoid what’s called an adrenal crisis (click through to Wikipedia if you want the details).  Adrenal crisis is how people with adrenal insufficiency tend to die.

It’s not just physical stress that can cause an adrenal crisis, however.  It’s also emotional stress.  Wikipedia’s commentary on prevention of adrenal crisis is, I quote:

Adrenal crisis is triggered by stress and hence people with adrenal insufficiency need to avoid stressful situations.

That’s very important for managing adrenal insufficiency.

I recently found out that my father is dying of cancer.  We don’t know how long he has.  It has metastasized into several organs to the point where they haven’t been able to trace it back to wherever it originated.

My mother, his only caretaker, has a more severe form of a neuromuscular junction disorder (probably myasthenia gravis) that I also have.  She has to not only take care of him, but do all the jobs around the house that he used to do.  Before all this started, she had a myasthenia crisis and almost died in the ICU when she stopped breathing earlier this year.  Doctors have warned her that she’s not able to handle this and that she needs to move closer to a hospital.

My parents recently had to temporarily evacuate their home due to a forest fire that went right past it.

My grandmother has been slowing down and in poor health, but in a vague enough way they don’t really know what’s going on.  She says she’s willing to take antibiotics, but draws the line at invasive treatments like surgery, if they figure out what’s going on.  She says she’s led a good long life and she’s at peace with death.

I am under more stress right now than I have ever been in my life.  I have to consistently take a higher dose of dexamethasone than normal, just to be able to minimally function.  My endocrinologist says I’m doing the exact right thing.  But taking the extra dexamethasone doesn’t magically make the stress or its effects and dangers disappear, it just makes you safer.

I reserve the right to delete whatever posts I want for whatever reasons I want.

I reserve the right not to explain to you why I’m deleting your posts.

I reserve the right not to owe any of you an explanation for anything I do on this blog, or in my life in general.

And if you come here deliberately trying to antagonize me — and you know who you are, because you’ve been doing it for years — I will treat it the same as if you walked up and tried to start a fistfight.  Because right now, more than ever, any stress can have a catastrophic effect on my health.  Adrenal insufficiency is the worst disease to combine with stress, and myasthenia gravis doesn’t help either, especially now that I’m going on Cellcept (an immune-suppressing drug).  And don’t try to tell me these diseases aren’t real, my doctors who in both cases did the labwork personally, will laugh in your face. And to be abundantly clear it’s adrenal insufficiency (i.e. they could not find cortisol in my blood at all), not adrenal fatigue (i.e. a condition used by quacks to blame literally any symptom on, regardless of your actual hormone levels, which then puts you in danger because you’re not getting treatment for whatever the real disease is).

So if you disagree with me, disagree with me.

But if you’re here to antagonize, to bully, to start fights, with a chip on your shoulder, to threaten me, to accuse me of not really being disabled, to deliberately trigger my PTSD, and all the other things that stalkers and trolls like to do for fun?  Fuck off back where you came from and never bother me again.  And understand that if I actually enter an adrenal crisis because of stress you caused, then you are partially responsible for what happened.  I guarantee you the adrenal insufficiency is 100% the real deal, no matter what you think.  And people who know me will view you as responsible.  If you have enough of a conscience to care about things like that, then think about it before you pick fights with me for fun.  I have enough going on right now without that.  Have some basic human decency for once.

This is how I feel when I read a lot of posts about the Judge Rotenberg Center.

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Close the Judge Rotenberg Center.  For the love of everything holy, close the Judge Rotenberg Center.  Stomp it into the ground and dance on its fucking ashes.

But.

You won’t be done.

You’ll just have eliminated the most obvious of a huge number of places that torture and abuse their patients in the name of treatment.

Skin shock is showy and scary and it makes a good story and it makes it easy to see what is hurting people.

But people can be hurt just as bad or worse without it.

People can be hurt just as bad or worse by places that don’t brag about the torture they inflict on their patients.

People can be hurt just as bad or worse in the institutions everyone loves to love because they’re so beautiful, they have such wonderful grounds, they seem so loving.

You can’t understand, maybe, why this is true.

You think, maybe, that abuse, trauma, PTSD, CPTSD, can be measured in volts.

It can’t.

You think, maybe, that the destruction of lives is proportional to the visible destruction heaped on the body.

It isn’t.

It’s so much more complicated.

I have a friend who gets really upset every time some over-the-top institutional horror story makes the news.  So do I, for that matter.

One part of it is because, obviously, it’s horrible, and we’ve both lived through horrible things.  She’s been to both state and private institutions (and found private ones worse, by the way, so much for stereotypes).  I’ve been to private institutions and private residential treatment facilities and what I like to call ‘community institutionalization’… too hard o explain in such a short space.

I spent most of my teen years in the psych system (and to some degree was exposed before that) and sometimes in mixed psych/DD settings, and pretty much all of my adulthood in the DD system.  I have physical disabilities that could easily put me in a nursing home, and developmental disabilities that qualify me for admission to an ICF/MR.  Staying free takes up more of my energy than I’d like.

I’ve been abused and tortured and traumatized and almost-killed in all kinds of settings, inpatient and outpatient.

At one time in my life, with severe self-injury, I’d have made an ideal candidate for the Judge Rotenberg Center.  I am not somehow different from people who go there.  You’d be surprised at the people who go there and how not-different they are from many people you’d imagine would never go there.

(That’s true of all institutions.  The people who live inside them, and outside of them, are identical in every way.  The only difference is how the support takes place.  When it’s support at all and not just hell on earth.)

Anyway.

What I want to say is.

One reason that my friend and I get upset by these stories is because we’ve lived through some horror stories of our own.

Another reason that we get upset by these stories is this fear we have, that we don’t think is irrational at all.

We fear that when people focus on the outrageous, the flamboyantly awful, then they won’t see the way the outright ordinary, even the seemingly wonderful, can do the same degree of harm, or worse.

The worst harm in institutions is, by the testimony of many, many inmates, not just the physical torture that takes place in some places — sometimes above-board, sometimes secretly.   Often it’s things you can’t even name.  Those things are happening in the JRC too.  Those things hurt people there as much as the torture does.  Nobody is doing a huge campaign to shut down those things.

Many people, if the JRC is closed, will simply be sent to other institutions.

They will then be told that they are lucky and that those other institutions are better.

They may come to believe those other institutions are better.

Those other institutions may actually be better.  But they may not be.  It may just be that the badness has seeped down deep into some underground place where you can’t count it, can’t name it, can’t even describe it, and therefore it…. isn’t there.

And they will continue to get hurt by that.  They may not realize they’re getting hurt by that.  They may attribute the hurt to themselves, to their mental illness, to anything but the environment that is causing or contributing to it.

And that hurt may be harder to recover from than the JRC.

How do I know this?  Because while I was not in the JRC, I was in mental institutions that physically tortured me (not with skin-shock), and was then moved to a ‘better’ place that tortured me in harder-to-explain ways, and hurt me in deeper places, and I learned to say and believe how ‘better’ they were while living how worse they were deep down.  I still live with how worse they were.

And I know many other people who have the same story to tell.

And I know that unlike me, many people who live at the JRC won’t be able to escape the institutional system the way I was able to.  My situation was unique to me.  I didn’t get out because I was better off disability-wise than others, I got out because I was in a particular, unique set of circumstances.  The difference between people on the inside and people on the outside is not their disability.

But once you’re in a long-term institution, it’s harder to get out.  I was lucky, I was usually in a string of short-term institutions (even if I spent longer time periods in them than other people there), then when I was in a longer-term one, my residential facility closed and it became useful to them to decide I was recovered enough to leave, and to “transition” me to a “less restrictive environment”.  Which was still a hellish environment, mind you, but more chance of freedom, there, too.  And I had people around me savvy enough to advise me how to take the chances I had.

And most of the people in the JRC won’t be leaving to freedom, if it gets closed.  They’ll go to other institutions.  And however grateful they are to be out of the JRC, they will get hurt in those new places.  Because that’s what institutions do.  Invariably.  You don’t have to know you’re hurt to get hurt there.  You don’t have to understand how deep the hurt goes, to get hurt there.  You just have to be there.  And you’re often the last person to know how deep it goes, right down to the level of your self and identity and everything important to you.  You can get turned inside out without anyone laying a finger on you.

Nobody will ever be able to pinpoint the institution that inflicts the worst of this sort of damage on its inmates, because this sort of damage is, by its very nature, secretive, even from the person it’s being inflicted upon.  And because nobody will be able to pinpoint the worst of it, there will never be a massive, targeted, decades-long campaign to close the worst of these institutions.  Anonymous will never catch on and take part.  The world will not be outraged by the damage inflicted, no matter how devastating.

And if the people damaged by these institutions show that they are grievously psychologically injured by these institutions, people won’t connect it to the institutions.  They’ll connect it to the nebulous concept of ‘mental illness’, and quite possibly try to construct more of the exact same kind of institutions to deal with it.  Nobody will notice that the ‘increased mental illness’ is correlated with the institutions themselves.  Nobody ever does notice.

Nobody catalogues this kind of damage.  Few people study it.  Few people understand it.  Few people can see when and where it is happening.  Few people can understand the damage in the first place.  Most people who describe the damage won’t be believed.

Worse than merely not being believed:

When we describe the damage inflicted upon us, we are invariably described as ungrateful for the advantages that we had in not being in “a place like the Judge Rotenberg Center”, or not being in “a state institution”, or not being in a place that the world universally recognizes as horrible.  Because some of the worst damage is inflicted on us in places that other people see as wonderful.

They will ignore the abundant testimonials by ex-patients who have experienced a wide variety of institutions.  There are tons and tons of people who have been to both state and private institutions and found the private ones immeasurably more damaging, because the extra funding means extra ability for staff to mess with the heads of the inmates.  There are tons and tons of people who have been to both state institutions and group homes and found the group homes immeasurably worse.  There are tons and tons of people who have been to both locked private traditional-institutions, and unlocked residential facilities and group homes, and found the residential facilities and group homes immeasurably worse.  There are tons and tons of people who have been physically tortured at one institution, moved to another institution where no apparent physical torture was present and found the second institution immeasurably worse.  There are people who have been moved from ‘bad’ institutions everyone loves to hate, to wonderful paradise-like ‘intentional communities’ where they had, in the eyes of others, everything they could possibly want, and described how much more horrible the intentional communities were, the ones formed with the best intentions of parents and staff.

People ignore this.

People ignore this completely.

No, worse.

People ignore this and they utterly disparage any current or former inmate who says these things.  They say we don’t understand what we’re talking about.  They say we have no vision.  They say we have no comprehension. They say we don’t understand how good we have it.

And it’s even worse for people who have only been to the ‘better’ (in the eyes of the public) institutions, and complain about how awful they are.  They’re told that they don’t understand how good they have it, only much worse.  And they are told they should be grateful for what they had, that they wouldn’t last a day in a ‘real institution’.

Hell, I’ve been told I haven’t been in a ‘real institution’ just because I was in locked, private, short-stay institutions a lot of the time.  (And one private long-stay institution that was on a ranch in the country so it didn’t count as an institution, somehow.)  Never mind that, at the time, I was referred to as institutionalized by everyone in the system, including people in these institutions… apparently it’s not an institution until it’s a big-campus state institution.

So people who’ve only been in much fancier, much ‘better’ institutions than I’ve ever set foot in, are told this only ten times worse than anything I’ve ever gotten for talking about my experiences.  Especially if they’ve been in the pseudo-utopian farm communities, or the ‘intentional communities’, or things like Camphill, which are all billed as not institutional somehow even though they totally are.  You can’t change an institution by changing the shape of the building and slapping on a new coat of paint.

Anyway.

People who have been through the worst kinds of hell that institutions can provide are not believed, because the worst kinds of hell that institutions can provide are not things that people outside of institutions can understand in any way.  People outside of institutions want the blood and gore and skin shocks to prove a place is horrible.  They don’t want to understand that there are things more horrible than any of that.  They don’t want to understand.  They just don’t want to understand.

And people in institutions often don’t want to understand either.  I didn’t want to understand what was happening to me.  I wanted to believe that now that I wasn’t being tied down and tortured on a daily basis, then I was free.  I wanted to believe that really badly.  You have a vested interest in believing you’re someplace better now, that things will get better.  Sometimes believing things are better is your only defense against how awful things are.

But once I really got out, and I had to deal with the intense emotional and psychological injury I’d been done by all of these places, the truth gradually began to dawn on me.  It’s easier to heal from physical wounds than it is from psychological and emotional wounds.  It’s easier to heal from the obvious horrors than the hidden horrors that lurk behind the scenes, turning you inside out and upside down, piece by piece, one bit at a time.  You can heal, but I can tell you that it’s not being tied down, not physical or sexual assault, not even the horrifying restraint practices I sometimes endured, not the physical pain, that continues to haunt me.  I mean, it does, to some degree.  Things like that always do.  But there are things that have damaged me deeper, in ways I can’t even articulate.

And my friends and I, when we see coverage like this, we’re so afraid.

We’re afraid of the ‘better’ institutions.

We’re afraid of the public’s idea of what a ‘really bad institution’ is.

We’re afraid of some of the disability community’s idea of what a ‘really bad institution’ is.

The JRC is a really bad institution.  It’s doing that horrible kind of damage at the same time that it’s doing the physical damage.  I can see that.  Because it’s got enough funding, it can really fuck with people’s heads.

But you could force the JRC to remove every piece of physical punishment it owns, even restraints.  And it would still be horrible.  It could even become worse.  Because when places can’t focus on hurting your body, they have more time to focus on hurting your mind.  And hurting your mind does the most lasting damage there is.

The JRC needs to be shut down, period.

But there are places just as bad that will never be shut down if we use the JRC as the model of what the worst kinds of institution look like.

And there are places even worse that will never be shut down either.

And the worst places in the world, generally, are the same ones that will get propped up by the shutting down of the places the public has the most visceral unpleasant reactions to.

There’s problems in the disability community, too, and until they’re exposed for what they are, there will be a lot of difficulty changing things.

There’s… a lot of disabled people out there who engage in the completely unproductive practice of competing to talk about who stayed in the worst institutions, who had the worst treatment.

Understand that when I’m talking about the worst institutions above, I’m not talking about the worst institutions in any kind of competitive sense.  I’m talking about, the worst in terms of the overall amount and kinds of damage done.

I’m not saying that there aren’t people who had worse experiences in state institutions than private ones, or that there aren’t people who had worse experiences in traditional institutions than in pseudo-utopian farm communities.  I’m not trying to negate any one person’s personal experience.  I’m just trying to explain… things are not what they seem, what everyone believes to be true is not necessarily the truth.

But I’ve seen disabled people who compete with each other about things like this.  They say that they, unlike so-and-so, had experience with real institutions.  Or they, unlike so-and-so, had real bad experiences.  Or they, unlike so-and-so, were really traumatized by what happened to them.  That because they stayed for months rather than days, or years rather than months, their experiences were automatically worse and more deserving of recognition.

And there’s… absolutely nothing productive that happens there.  That’s ego-driven bullshit.  It’s not activism, it’s not helping anyone at all.  It’s a competition in self-pity.

So understand, again… when I’m comparing things, I’m doing so not with the aim of undermining any given person’s experiences in their own life.  I’m doing so with the aim of showing people things they don’t want to see.  I’m saying that what most people say is best, in terms of institutions, is often the worst of all.  That often, the most damage is done where it can be seen the least.  People have to understand this if they’re going to have any hope of actually reducing damage.

So close the JRC, close it over and over and over again until it’s really damn closed.

But… don’t focus on it to the exclusion of places just as bad or worse that don’t necessarily look as bad on paper.

Understand that your visceral reaction to the idea of skin shocks doesn’t make it the worst possible punishment that can be devised.  It’s a pretty diabolical physical punishment.  But sometimes — no, more like often or usually — people are damaged worse by things that don’t touch them physically at all.

Your instincts here are not necessarily a good guide to what is truly awful.

And I worry so so much about what will happen to people after it closes.

And I worry so so much about people enduring unspeakable damage, sometimes far worse than skin shock would hurt the same people, in institutions considered progressive and even utopian.

(Trust me, behind just about every utopian institution lies a dystopia beyond imagining.  And I worry about the “He loved Big Brother” effect obscuring people’s views of what actually goes on in those places.)

My worst nightmare.  And when I say my worst nightmare, I mean, these are actually real actual dreams I have that are worse than any other nightmares I’ve ever had.  They vary in content, but they go something like this:

I’m living in a place with lots of other people with disabilities.  There are staff there.  The staff try to give us every freedom they possibly can, at least as visible from the outside.  In one of these nightmares, I’m climbing a tree, outdoors, and totally allowed to do so.  But there is someone following along behind me to make sure I don’t get hurt.  I feel like a child.

I feel like I’m suffocating.  I feel like I’m suffocating in cotton candy.  But I can’t point to anything particular that’s wrong.  There’s this fog that lurks over the entire place.  It’s white, maybe slightly yellow or pinkish white, but mostly white.  And it obscures the ability to see anything.  And it smells like sweetness.  And it feels like death, in the worst possible sense.   But you can’t tell where it’s coming from.  It’s everywhere and nowhere at once.  You can’t see it except in your head, and only out of the corner of your mind’s eye.

Staff are nice to us, in the same way that people are nice to young children.  They giggle at us as if we’re cute.  They hug us a lot.

They also make us do what they want us to do.  It’s not possible to know how they do it.  They don’t use physical torture or restraints.  They don’t even always use drugging or anything like that.  We just… somehow always end up moving in the direction that they want us to move in, so to speak.

When I wake up, I feel an intense longing for the place I just woke up from, just for a minute or two.  And then I realize what’s going on, and I want to vomit over and over and over again until the experience is gone from my head forever.

This isn’t the best description, because the problems of these places can’t be described.  I once spent six days in a place very much like that, though, and the sickly-sweet-death-fog clung to me for years before I could get it to dissipate.

Nobody will ever get the kind of backing to close a place like that, that they will to close a place like the JRC.  Even though a place like that could potentially do more damage than the JRC, after a person is moved from the JRC to a place like that.  And if we close the JRC, it’s quite possible idealistic people will be building places like that to take its place.

I can’t explain why it’s as bad as, ,or potentially even worse than the JRC or a place like it.

I can’t.

But it is.

Please trust me on that.

Please understand what I’m trying to say here, because it’s incredibly important, and not enough people are saying it.  (And no, it’s not “don’t close the JRC” or “the JRC is good”.  Somehow, people are really fond of reducing important, complex things I say to simplistic bullshit like that.)

I’m trying to say this, for the sake of all the people who won’t be helped if we focus only on closing the JRC.

Now I’m going to try to get some sleep again.  I hope I don’t have nightmares.

ETA:  Before anyone tells me, as they always tell me when I say this, that the Judge Rotenberg Center will call attention to the issue and everything will follow from there and the public will be interested in closing all the other institutions then, later, once we get to the JRC first, that’s not at all how I’ve ever seen it work, not with Willowbrook, not with anything.  (And a friend of mine worked in a “good institution” that killed a former Willowbrook client, mind you.  She got fired for trying to stop them from killing her.  So she survived Willowbrook only to get killed by staff in a ‘supported apartment’ group home setting.  So… that’s a very specific example for a very specific reason.)  The public doesn’t want to close all institutions when they hear of things like this.  They want to make good institutions and then forget about the matter.  And the good institutions can be worse than the old ones in many ways.

[This post was originally written on December 21, 2013.  I completely forgot I wrote it, but it is always a good time to resurrect a post of this sort.  Because people always need a reminder of certain realities about  institutions.  They’re all too happy to forget, that much never changes.]

Fat people and feeding tubes.

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This isn’t a post I like to write.  The idea to write it always comes after someone, who is not communicating with me in good faith, approaches me and makes snide remarks about how I can possibly need a feeding tube if I’m fat.  Except they usually go beyond calling me fat.  They usually make some reference to my weight that makes it sound like I’m unusually fat, just to make things worse.  In one case, a known repeat cyber-bully (he has made threatening phone calls to a friend of mine — if I’d recognized him on sight I’d have deleted his comment unread) even told me he’d lost some relatively minor amount of weight during the course of a disease I don’t even have, and that therefore since I was still fat, clearly I couldn’t have any of the diseases I do have.  It’s clear that most of the time, these people are not actually interested in hearing my answers to their questions.  They are here to take pot shots at my weight, and to imply that I’m not really sick.

But the thing is, even people who are not bullies have questions like this in their minds sometimes.  And many people who are fat themselves, can be slow in recognizing that they have a disease.  And so can the doctors of fat people, who have all the same assumptions about fat and weight loss that the rest of the world has.  So understand when I’m writing this… the bullies didn’t goad me into writing it.  I’m writing it because it’s an important topic to understand when it comes to healthcare for fat people.

And because fat people die every single day due to inadequate healthcare:

  • When we get sick it’s recognized less often.
  • We’re more likely to be told to go home and lose weight and forget about whatever symptoms brought us in.
  • If our disease causes unexplained weight loss, that will initially be seen as a good thing, even if the disease turns out to be cancer.  (Unexplained weight loss is always a serious medical symptom that needs checking out, no matter how much you weigh to begin with.)
  • If our disease causes weight gain, then we won’t be taken seriously either, we’ll just be blamed for the weight gain.  (This happens all the time with Type 2 Diabetes, which sometimes causes weight gain rather than just being caused by it.)
  • Due to bad experiences with doctors, many fat people won’t seek healthcare even if we are dying.

These are very serious problems, and any Internet bully who adds to these problems is contributing to a lot of suffering and death for fat people and our loved ones.  To the ones who bug me relentlessly — see how funny it seems when it’s your mother with the same diseases I have, and she dies before she can get adequate healthcare because her doctors aren’t as on-the-ball as mine were.

So here’s the thing:  I have gastroparesis.  That’s a partially paralyzed stomach.  It’s one of a number of conditions classified as motility disorders, which are disorders in the ability of your body to move food efficiently down your digestive system.  It’s not diagnosed by weight, it’s diagnosed by a test where you swallow radioactive eggs and they see how long it stays in your stomach.  Mine stayed in my stomach too long, therefore I have gastroparesis.  End of story, there’s no arguing with that.

Symptoms of gastroparesis are a weird thing.  With many diseases, the degree of symptoms is roughly the same as the degree of how severe the actual cause is.  Gastroparesis is different.  You can have severe symptoms with fairly mild slowing of the stomach.  You can have very mild symptoms in a stomach that’s almost stopped altogether.  Nobody knows why this is.

Symptoms of gastroparesis include nausea, vomiting, reflux, bloating, vomiting up undigested food from three days ago, loss of appetite, loss of desire to eat even if you technically have an appetite (you feel starving but can’t make yourself eat),  feeling full too easily, weight loss, blood sugar problems, and occasionally weight gain.  (More on that later.)

I have had most of the symptoms of gastroparesis for a very long time, and I also have symptoms of motility problems in my esophagus going back longer.  When things really came to a head for me, I had stopped being able to keep down any food except broth and occasional, tiny servings of grits.  Then I got aspiration pneumonia from the associated reflux.  Then I landed in the hospital and launched into what we now know was skating on the edge of an adrenal crisis, but back then we had no idea.

Being fat delayed my treatment.

People have this bizarre view that if a person loses weight, they just go from fat to skinny.  They also have this bizarre view that it takes eating a lot to stay fat, and that anyone who isn’t eating a lot instantly goes from fat to skinny.  So when I told them “I’ve been eating nothing but broth and grits for weeks, and my weight is dropping” they didn’t believe me.  They didn’t believe me, in fact, until I had been in the hospital under constant supervision, eating absolutely nothing, and the weight continued to drop off faster and faster.  Finally they got a weight on me, and freaked out at how low it was compared to my last weight in the doctor’s office.  They said that I was burning muscle and that you can die of that, especially if it starts affecting your heart.  It didn’t matter that at this point I was 200 pounds (I’d been 245 to begin with), which is still technically fat.  Everything the doctors told me, said that rapid weight loss from failure to be able to eat can kill you before you even become thin.  But it took seeing me failing to eat every day before that knowledge could break through their own biases.

So they embarked on a program to bring my weight up.  Yes, I said bring my weight up.  Because if you go from not eating, to eating a sensible amount of food, then that is what is going to happen, no matter what your weight is at the moment.  The fact that I weighed 200 pounds did not give me the magic ability to start eating a normal amount of food and keep losing weight.  That’s not how human physiology works.

They put me on every nausea medication they possibly could.  I ended up on a cocktail of Reglan, Zofran, Phenergan, Ativan, Benadryl, and Marinol.  Prior to the Marinol, even that combination wasn’t quite enough, and they were seriously considering putting in a feeding tube.  They had, at this point, done their preliminary diagnosis of gastroparesis, and they were sure a feeding tube was in my future.  But they were able to send me home on a diet of Ensure Plus and lots of nausea meds.  It worked for a few months.

But my gastroparesis symptoms only got worse.  They were getting worse in two areas.  One, I was refluxing stomach fluid into my lungs and getting aspiration pneumonia a lot.  The aspirations were happening several times a week, and I think I got pneumonia something like 7 times that year.  With bronchiectasis to make things even worse, the pneumonia was going to kill me.  Secondly, I was losing weight again.  I had brought my weight up to 223 pounds at my best, but then it went down to 193 at a point when I could only keep down one Ensure a day.  It went down that fast within a couple of weeks.

So they agreed I needed a feeding tube if I were to survive.  They didn’t agree that I should want to survive, but that’s another story I’ve told before.  They did agree that I needed a feeding tube in order to survive.  And eventually I got that feeding tube.

The thing about feeding tubes, for any skeptics out there?  Is that they don’t give them out to people who don’t need them.  Yes, everyone has heard of rich women who diet by using nasogastric tubes.  But this isn’t a nasogastric tube, it’s a GJ tube.  And I’m not rich, I’m on disabled adult child benefits, Medicare. and Medicaid.  Literally the only way to get a feeding tube on Medicare and Medicaid, is to desperately need one.  Literally the only way to get this particular hospital to place a feeding tube of this nature, is to desperately need one.  Anyone who can see that I have a feeding tube and still questions whether I need one, all I can say is they have no business advising anyone on the practice of medicine because that ain’t how it works.

GJ feeding tube

The above feeding tube?  Only way to get it is because it’s medically necessary.

So why is a feeding tube medically necessary in a fat person?

Because feeding tubes are given for a very wide range of problems.  In my case, there’s two big problems that are simultaneously solved, or at least made much better, by the same feeding tube.

1.  I can’t eat sufficient food to maintain my weight, or even to drop weight slowly enough to be healthy.  My stomach doesn’t work, so I have to bypass it by putting food directly into my intestines.

2.  I aspirate stomach fluid, which can be drained out of one half of my feeding tube.  Continued aspirations would result in repeated infections until eventual death.

It’s the first one people don’t seem to grasp.

I’ll make it very simple:  You can die from complications of rapid weight loss, before you ever become thin.  You can put a strain on your heart, you can dehydrate, there are a million ways to die from malnutrition or dehydration before you become thin.  And it’s not best medical practice to sit around watching a person waste away, waiting until they become below a certain weight before you become concerned that they’re doing things like burning heart muscle.

Even if you manage to become thin without dying, your body is wrecked at that point, and it’s going to be harder to heal you and keep you alive than if the tube feedings started while you were still fat.  My body had a lot of problems and I never even made it to thin.

I’ve consulted with nutritionists on the matter, and they’ve repeatedly told me that my goal should not be weight loss.  My goal should not be weight gain either.  My goal should be to stabilize at whatever weight my body seems to want to stabilize at, and then stay there.  Any rapid, unintended weight gain or weight loss is a problem that needs to be dealt with by adjusting the way my tube feedings are done.

For what it’s worth, right now I weigh 178 pounds.  That is 67 pounds lighter than I weighed when all of this started.  Most people would call losing 67 pounds without intending to, to be symptom of a major medical problem.  That is how every medical professional in my life has treated the matter.

The only people who goad me about how fat I supposedly am (and they always add at least 100-200 pounds to their estimate of my weight) are people online who only see me in pictures.  Offline, people are constantly asking me about having lost weight.  It’s not subtle.  It’s not even close to subtle.  My clothes hang off of me.  My pants and skirts fall down if I don’t use belts or suspenders.  My entire facial shape has changed.  Everyone who hasn’t seen me in awhile tells me I look like I’ve lost weight.  Medical professionals express extreme worry about the amount of weight I’ve lost.  I’ve had random nurses come up to me in the emergency room and say “Oh my god, are you okay, it’s the gastroparesis and malabsorption making you lose all that weight, isn’t it?” and things of the like.

Only on the Internet can you lose 70 pounds so rapidly that it scares your doctors, and then be told how fat you are for not instantly losing 70 more.

I may gain some of this weight back now that I’m on steroids for the adrenal insufficiency, which is another condition that can cause weight loss.

But back to weight and gastroparesis.

Not only is it not true that only thin people get gastroparesis.  Not only is it not true that very fat minus a lot of weight can still equal fat, if you were fat enough to start with.  But gastroparesis can actually cause weight gain.

It works like this:

Gastroparesis causes the amount of calories that you get, to be restricted.

Your body at first loses weight.

Then your body goes into starvation mode.  It notices that there are fewer calories.  So it begins trying to hang onto every single calorie for dear life.

At which point your body gains weight again.

That’s common for a lot of diseases that cause restriction in calories, and can be especially common in diseases where the symptoms vary day to day, so the amount that you can eat varies as well.

So “How can you have gastroparesis?  You’re fat!”  Doesn’t work on so many levels.

But this kind of thinking kills fat people who have diseases like this one.  It kills fat people who have anorexia, who can’t get treatment because their body weight isn’t low enough.  It kills fat people in general.  The idea that you can’t remain fat while having a disease that affects eating in some way, is extremely common and extremely deadly to any fat person who ends up with such a disease.  And the idea that we only deserve treatment if we’ve become so starved that we are skinny (at which point it may be too late to save us), kills us as well.  Every.  Single.  Day.

I find it ridiculous when people talk to me about how much I’m supposedly eating, anyway.  The only food I take in is a nutritional supplement called Osmolite.  It’s pre-mixed to be a certain number of calories a day.  I take even fewer calories a day than are in that mixture, because I don’t feel like I need the full 1500.  There is no other source of food for me.  Any food I don’t eat by the end of the day is poured down the drain.  Literally everything comes through the feeding tube.  So don’t give me shit about ‘overeating’, you clearly don’t know what you’re talking about.  For whatever reason, my body wants to be about 180 pounds, and has done ever since I had a period of starvation in my early twenties.  And it’s honestly none of your business.

So if you ever hear someone running around talking about any fat person in terms of, “She can’t really have a condition affecting food intake, or she wouldn’t be fat,” then point them at this post.   If you ever hear anyone saying that only thin people need feeding tubes, point them at this post.

Because the need for a feeding tube comes most often when someone can’t eat.  When a fat person can’t eat, that is as dangerous as when a thin person can’t eat.  You don’t wait for all the weight to drop off before you decide that this whole not eating thing is a medical emergency.  And this is why plenty of fat people have feeding tubes.

We may have feeding tubes because we can’t swallow.  We may have feeding tubes because we choke on our food.  We may have feeding tubes to bypass a stomach that doesn’t work.  We may have feeding tubes to drain stomach fluids that would otherwise fill up our lungs and kill us.  We may have feeding tubes because our esophagus doesn’t work.  We may have feeding tubes for every reason that anyone else needs a feeding tube, and none of those things are changed by the fact that a person is fat.  All of these things are just as serious problems in a fat person as in a thin person.

I honestly think that some of the nonsense I hear about fat people and feeding tubes is because in the online world, feeding tubes have become a symbol of anorexia, a condition that is (erroneously) associated in most people’s minds with only super-thin people.  Feeding tubes are what happens when someone with anorexia can’t eat enough on their own to maintain an even vaguely healthy weight.  You see pictures of people with feeding tubes all over anorexia websites, and chances are that if you see pictures of people with feeding tubes, you’re seeing pictures of extremely thin people.

But being severely underweight (for whatever reason) is only one among dozens of reasons a person might need a feeding tube.  And most of those dozens of reasons do not have a weight limit.  So please don’t bully and harass fat people for having feeding tubes.  And if you see someone you know doing the bullying and harassing, set the record straight.  Honestly, the fact that I have a feeding tube at all shows I need one, because they don’t implant GJ tubes without a damn good reason.  And the same is true for anyone else with a G tube, J tube, or GJ tube.  These are serious surgical procedures that are never undertaken lightly.

As for the bullies, I hope I never have to live in a world where they run my medical care.  I can just see them “You lost 70 pounds rapidly without trying?  Come back when you’ve lost 70 more and maybe then we’ll help you, if you don’t die first!”  It’s ludicrous.  And deadly.  All of these attitudes contribute to the deaths of fat people with genuine health problems.  And that’s why, instead of blowing it off like usual, I decided to make an entire post on the topic of fat, feeding tubes, and gastroparesis.

A warning: I won’t be accepting comments that are nasty towards fat people or that support the idea that our health problems aren’t as serious.  Nor am I going to be accepting comments to the effect of “go on a diet, it will solve everything”.  Nor will I accept comments from bullies.  This is about discrimination against fat people both in the healthcare industry and in broader society, and this is all this is about.  Anything else will be deleted.  Even when it comes under a cloak of “But I’m only so concernnnned about your healllllllth…”  This isn’t the time or the place for that crap, please respect that.  This is a post about why these bullies’ attitudes are potentially deadly to fat people, and I won’t have it pulled off course into a million unrelated debates.

P.S. Bullying fat people about medical stuff like this, and deliberately spreading misinformation about the medical needs of fat people, kills fat people.  Every one of you who targets me in this way has to know that in your heart.  Have that on your conscience, if you have enough of one to bleed through all your cruelty.  When it’s your turn to face yourself for who you are, you’ll have to answer for things like that.  I hope you can manage.

 

Empty Mirrors and Redwoods

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This was originally written and posted elsewhere on February 25, 2012.

This is in response to a quote:

“When someone with the authority of a teacher, say, describes the world and you are not in it, there is a moment of psychic disequilibrium, as if you looked into a mirror and saw nothing.” —Adrienne Rich

This is the story of my life. Not just teachers. Everyone. Everywhere. Not a moment. A lifetime.

Which is probably why one of my biggest goals in learning to communicate with people, in both standard and unusual ways, has always been to shout to the world that I exist, who I am, and that I am not going away without a fight.

It’s also why it hits me so hard when anyone tells me I’m impossible. They usually do it in the most fleeting ways. As in they don’t even give me a full once-over. In a moment they have decided I don’t exist. Sometimes it’s a matter of fact statement. “Real people don’t work like that.” Other times it is accompanied by some of the worst bullying I have ever encountered. “Real people don’t work like that. And I will stomp you into the ground for having the audacity to be who you are.” Any way it happens it hurts. Not just for me. I’m trying to make the way easier for others like me. I don’t want anyone ever to have to go through this again.

There is nowhere I can go that this won’t happen. Even if I try to go away from people, they can still follow. The closest I’ve ever come was when I first moved out on my own. I lived alone with my cat in a redwood forest. I would turn off the Internet, go outside, and talk to the rocks and the trees and the slugs and the fungus.

I’d fill my pockets with rocks. Or sit on the ground and stack rocks all over my body. And the rocks would tell me about my own solidity. They’d tell me about being part of mountains. And avalanches and mudslides. And volcanoes. And all the other things rocks know about. A small piece of granite in my hand would tell me about the smell of sun on a granite mountainside.

They told me I was part of the world too. Of the larger world. Many people say the world when they really mean the social world of human beings. The world is so much bigger than that. They told me that even if no human being told me this in my lifetime, that I do have a place in the world. A very small, particular place just for me. They said that everyone has a place like that. And that when I am done with my place in the human world, I will turn into all the animals and fungi and plants and microbes that will likely eat my remains. And then I will have other places in the world entirely. I may yet be a redwood tree when I grow up, just like some rocks turn into sand in the ocean.

Until now, I’ve never been able to fully express what all those rocks and stuff did for me. It was a surreal period of time. When I was online or with people, the main message I got was I didn’t exist. And even when the people weren’t around, their general behavior patterns followed me telling me I was a worthless, unreal waste of space. Then I’d go out to the rocks, in my driveway and elsewhere, and suddenly I had a place in the world and everything made sense. They didn’t tell me all these things in words. They told me through the patterns of what they were and where they’d been and what connections they had to other things. It’s hard to translate it into words or ideas, and harder still to translate into the dead, disconnected world that the mainstream culture wanted me to believe in.

So the rocks, the slugs, the dirt, the trees, and the fungus seemed to have no problem with being in the same world as me, and letting me know in so many ways that I belonged there. It was human beings that shut me out. The only thing I could write of it at the time: “I walk inside and I disappear; I walk outside and I have a place in the world again.”

But it wasn’t as simple as momentarily looking in a mirror and seeing nothing. My friend said it was more like looking at a painting without them in it and then being told it was a mirror. For me, it was not seeing myself no matter where I looked. I mean, on a deep level, I knew that I existed and that one day I would find at least one person like me. Knew it bone-deep, though I never imagined how much like me they’d be. But on the surface of my mind, it felt quite different.

On the surface, it was terror. Absolute unreasoning terror. That I might not really exist at all. That I might just be a thing. Forget not seeing myself in the mirror, I didn’t see myself anywhere. I felt like I was floating in a dark place without being able to perceive myself or anything around me. Or falling, living in free fall. Once it really started hitting home, I became terrified for my survival.

Because my life was not full of examples of anyone like me. Education was one way. I started junior high, high school, and college but I never truly finished them and deep down I knew I’d never finish. (Don’t make me explain the twists and turns in my educational history that made that statement possible.) I spent the majority of my teen years in either no school, institution schools, or special ed. And I knew that to the rest of the world none of us were real. And just — I can’t explain it fully — this caused an intense, deep terror of what my adulthood would be like.

After I fell off of the conveyor belt of life that all the real people were on, I was presented two, and exactly two, choices for my future. The first choice was that I could remain as I was, and go to an institution forever. The second choice was that I could get better and live on my own with no disability-related support. People called the second one words like “hope” and “we believe in you”. I called it a mirage. And it was really that second option that drove me to suicide over and over. Because that was the option I knew I would never become. And having it thrust in my face and called “hope” only gave me the message “hope is impossible”.

I knew this because I could see things about myself that none of those hopeful people could see. I saw that every month that life went on I was being expected to climb harder and run faster. And I saw that the things preventing me from doing those things… even if my skills were staying the same I’d be dropping further and further behind. But my skills were getting worse. And I knew exactly what that meant in terms of how feasible choice #2 would ever be.

Somewhere around when I got diagnosed, I coincidentally found Nobody Nowhere in a library. I brought it home because of nothing more than the picture on the cover. By the first page, I was in shock. By the next page, I cried. This was my first ever glimpse of myself mirrored in the eyes of another human being. I got profoundly lucky. I collect autiebiographies now, I think I have over a hundred, and that’s still one of the closest to my experience. If basic types of autism truly exist, she and I are in the same one. We are different in many other ways but not so much in that one. The first time I ever, ever was told by a human being in any form that I existed: I think I was 15 years old.

Somewhere in there I began making plans to escape. To run away to the woods and find some way to hide there and scratch out a living. But every time I tried going, I was caught long before I got there. People began making theories that something in my brain caused me to wander aimlessly with no real purpose in mind. They got me a bracelet that said so, that I couldn’t take off. Just one more mirror I didn’t exist within.

One reason I write about my experiences is to force the world to acknowledge who I really am and that I exist, that we exist as people like each other in these ways. But wrapped around that just as much is the desire to do for other people what Nobody Nowhere did for me. I know that a lot of people like me, given our language issues, don’t write a lot. And I want to be one of the ones that does, so that other people will benefit. And I don’t mean just about autism, although that will always be a large part of it. I mean everything in me that most of the world doesn’t acknowledge as a possibility let alone a large number of real life people. This happens to all marginalized people, and it also happens to people who just have things going on that are rare or contradict mainstream culture or the culture they live in. And I’m all of those things and I know how hard it is and I want to make it easier.

I also want to do something else. I’ve long had a video project in mind, but I don’t know if that will ever happen, so I do it in other ways too. I want people in the position I was in growing up, to know that choice #1 and choice #2 are not the only viable choices for a person to have. People kill themselves when they think they don’t have choices. And there are not enough choices in the world — but there are more than two.

Some truly nasty people once had a tittering little chat over my having said something like this once. It went something like “Why does she think her life is so great? She’s on welfare. She’s in public housing. She’s poor. She’s always going on about how wonderful this is, but that’s a shitty excuse for a life.”

I can’t even begin to explain the screwed-up worldviews that led to this little discussion. Including a complete misunderstanding of what does and doesn’t make disabled people happy with our lives (link to PDF). But really what it comes down to is this: Growing up, I learned that if I remained significantly disabled I would be in an institution. No other options. I knew long before anyone else did that cures were a pipe dream. I’d try hard to act like whatever they tried on me was making me better but that was bullshit and it fell apart fast. There was no such thing as a combination of freedom, and being unable to work or take care of myself. None. It wasn’t even imaginable. Nobody even made me aware of disability benefits or daily living services until I met other disabled adults.

To have no good options is a terrible thing. I want people to know there are options. They don’t work out for everyone. But to have the knowledge that there’s one option wakes your mind up and tells you there might be more. To actively look beyond the borders of your imagination. To be creative and keep trying. I know that the options I have now may disappear if the Republicans get their way, if the government collapses (even in a good way), if the economy gets ever more trashed. But my experiences since adulthood have stretched my imagination and taught me to keep trying for something until the day I die. Even if right now will seem downright luxurious compared to what is to come.

But what do I have now that is so special to me? I have a steady (if meager) income without having to destroy my body trying to work. I have subsidized housing, so I can (mostly) afford bills and food. I have housing at all. I have wheelchair accessible housing… mostly anyway. I have Medicaid and Medicare for health insurance. My GP is excellent and most of my other doctors are good. People actually pay attention to how to detect and treat pain, infection, and other medical stuff despite my communication problems.

I have a means of communicating in words that isn’t speech. I have learned how to communicate in words rather than just imitate what I thought was expected. I have a wonderful cat. I have friends who know me as myself, not a mirage, and who are not bullies in disguise. Including friends where we can understand each other without having to try too hard. Including some who can do so without words. I have learned some degree of self-respect and basic ethical awareness when dealing with people. I have a meaningful spiritual life. I have Internet access. And I’m alive.

So I have the basics — and more — and that is more than I ever expected. There’s things that would be better if they were different. But I can live this way fine. And I just wonder what kind of life a person has to have led to act like what I have is worthless.

The thing about never seeing yourself reflected by the people around you is that it’s simultaneously traumatic and invisible. So you feel terrible but you can’t put a finger on why. So unless you have someone telling you what’s going on, you’re eventually going to turn it around on yourself and become really miserable. And then your society generally sees your feelings as the problem, which just puts another layer of the same thing. It gets really convoluted. Because the answer — actually acknowledging you exist — is apparently too simple for some people.

This is why I freak out so badly sometimes when i realize I’m talking to someone who’s force-fitting me or what I’m saying into categories in their head that make no sense. It’s not the one instance. It’s the lifetime of little instances built up over the decades. It’s the fear — complete, unreasoning terror — of things ever going back to how they used to be.

I can’t imagine what it must feel like to grow up in a world where people see you. And talk to you. And about you. And not just about a series of illusions and mirages in their heads. I’m not talking about going out of their way to be inviting, even. Just noticing would be enough. Because when people notice, they act on what they’ve noticed, and it just unfolds naturally.

And if you ever wonder why I am so attached to redwood forests, it’s that. Both the one I was born in and the one I first lived on my own in. In both instances there was an intense sense of exactly where I belonged in the world. Everything around me told me that. And if I want to remember, all I have to do is think about that environment. Trees, soil, rocks, slugs, fungus, owls, moss, lichens, everything. I’m not able to live there but that doesn’t prevent me from being aware of these places. And whether it’s because I was born in such a place, or some other reason, that gives me the most intense feeling of belonging in the world that I’ve ever known.

After this, I am never again putting up with bullies telling me that my medical conditions are imaginary.

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After my diagnosis of adrenal insufficiency, then the last foothold that bullies had made into my mind, it fell away like sand.

It wasn’t just that the diagnosis was so obvious, so grounded in specific laboratory tests that nobody with any knowledge could argue with.  It wasn’t that, so much, at all.

It was what I felt in my body.

It was the way I felt life returning to my body.

It was the way I felt sturdy rather than fragile.

It was doing forty jumping jacks in a row, fast.

It was going up seven flights of steps to use a treadmill for ten minutes, then go all the way downstairs, and then back up to my apartment.

It was doing things, large and small, that my body couldn’t do before.  Couldn’t.  Not even a little.

It was feeling that fall away from me again, temporarily, when my body first adjusted to the dexamethasone dose I was on, and having it come back again when we raised the dose.

I realized that the reason the bullies got to me so badly was because deep down I thought maybe they were right.   I’d experienced a severe but undiagnosed chronic illness for years, and it had gotten much worse six years ago.  I painstakingly hid as many aspects of it as I could, let people believe there were other reasons that I could do less online, because every time I described an illness, I’d get bullied for it.  I’d get told I was making stuff up for attention.  When I was hospitalized last year, I sought help online with obtaining access to a life-saving treatment, and some bullies even had the nerve to capitalize on a life-and-death medical situation to give them a platform to denounce me again.  Then when I described the situation, one of them had the extra nerve to come here and tell me that because I was fat, I couldn’t possibly have enough eating problems to need a feeding tube.  (I’ve lost nearly 70 pounds involuntarily.  When it was only 40 pounds in 2 months, a doctor told me I was burning muscle and that it was going to affect my heart.  Do I have to be dead of starvation before I’m thin enough for my gastroparesis to be real?)

And on some level I accepted this.

And I accepted it because I thought that maybe I really was imagining things.  After all, I had no firm diagnosis for this mystery illness that was causing me so much trouble.  Maybe I didn’t want to get better.  Maybe if I just wanted to enough, I could jump and run and walk up stairs.  Maybe I didn’t have to be in bed all day.  Maybe the vomiting and burning hot and freezing cold and total limpness were something I could make go away, with everything else, if I wanted to enough.  Maybe I was somehow making it up, and then fooling myself into thinking I wasn’t making it up.

And I can tell you that nearly everyone I talk to with a hard-to-diagnose condition has thought this way.  But those of us who have been bullied or harassed, and had rumors spread about us that we’re faking everything?  We think this way more.  We may hide it well, but most of us think this way, at least on bad days.  And it’s a terrible way to think.  It winds around your head and makes it hard to take any action at all in life.  It makes you doubt the deepest things about yourself.  It can make you passive, it can make you lash out, but either way it makes you less effective at anything you’re trying to do.  It’s hard to get anything done when you’re divided against yourself, doing the bullies’ work for them.

Anyway, this has all changed.

I don’t think like this anymore.

The test results tell me that everything I felt wrong with my body all these years, has a measurable, physical cause that’s very simple:  I don’t make enough cortisol, because I don’t make enough ACTH.  Years of depletion has led to chronic and even life-threatening illness.  And this is clearly adrenal insufficiency (a medical diagnosis), not ‘adrenal fatigue’ (a vague catch-all that requires no actual proof of an adrenal problem at all).

But it’s not the test results.

It’s what I feel in my body now that I’ve gone on dexamethasone.

It’s being able to run and jump and climb stairs and go for long walks.

It’s feeling sturdy for the first time in years.  It’s feeling the fire of life course through me for the first time in years.

It’s realizing I could live to old age, and starting to wonder what it will be like to have grey hair and wrinkles.

No bully can take those realizations away from me.

And the change that has happened in me makes me realize how disgusting this form of bullying is, and what a low form of humanity anyone is who deliberately participates in it.  And I’m angry.  It’s an intense, focused anger.  Focused on everyone who has ever tried to make me doubt who I am and what I am experiencing.

Because I have a better fucking track record than most people with chronic illnesses, when it comes to having things show up on actual test results like this.  And yet every time, every time I have to prove myself.  Sometimes the proof comes at the last minute.  One day the proof may come too late to save me, and you’ll have that on your conscience, if you even have a conscience.

But seriously:

Problems urinating, dismissed out of hand as psychological in 2000, diagnosed around 2006 as spasticity of the urethra, treated with an implant that helps my muscles relax.  But not before I had infection after infection after infection.

A variety of really nasty symptoms, dismissed out of hand as being ‘fat and lazy’ and other things of the like, for years.  By the time, around 2003, that they found the problem, my gallbladder had not only produced two large gallstones, it had failed completely and was sitting in there dead by the time they pulled it out.  The surgeon was visibly angry at everyone who had delayed diagnosis and treatment.

Breathing symptoms.  Got me thrown out of emergency rooms more than once because treatments for asthma didn’t help — cyberbullies then proceeded to use those stories to convince people that “even ER doctors think she’s manipulative, see?”  They never thought to check if it was something other than asthma.  Eventually they found an infection and atelectasis in part of my lung.  Even after that was fixed, I was getting told that my continued breathing problems weren’t a big deal, were all in my head, all that kind of thing.  Until I got assigned a new pulmonologist, who did a CT scan and found “mild bilateral lower lobe bronchiectasis and scattered peripheral tree-in-bud opacities consistent with small airways disease”.  When treated for bronchiectasis, the problems got significantly better.  Imagine that?

I had ongoing joint pain that I knew wasn’t arthritis, so I avoided telling doctors about it because I didn’t want to tell them about one more thing wrong with me that didn’t fit in the usual box.  Finally a doctor badgered me into admitting that I had joint pain, then had me perform a series of movements.  He diagnosed me with benign joint hypermobility syndrome on the spot — a condition that’s characterized by overly flexible joints combined with widespread joint pain.  The test is really simple.  Bullies claimed I was faking this even though I posted pictures of my thumb flat against my wrist, which is impossible to do without a hypermobile wrist joint.  (I can also stick my foot behind my head and other fun party tricks that I really shouldn’t, medically, do.  But I do do it sometimes because it’s the fastest way to prove to a doctor that I’m not kidding around about being hypermobile.)

I had ongoing problems with nausea and food that stayed in my stomach for way too long, sometimes I’d throw up things I’d eaten days before.  This was eventually diagnosed as gastroparesis, using a test where you eat radioactive eggs and they test how slowly it goes through your stomach.

And now I’ve had this baffling array of symptoms, for years, and the blood cortisol test, ACTH test, and ACTH stimulation test confirmed that it’s a severe secondary adrenal insufficiency.  My response to treatment, according to my endocrinologist, more than confirms it.

How many people with chronic illness can say they have a track record this good?  Of saying they had a medical problem, and having it actually show up on a test in such a clear fashion?  I mean, the problems I have tested as having have not by any means all been the problems I was expecting to have.  But they all eventually showed up as something.  And that’s more than a lot of people can say.

So why the extensive bullying about being fake, when I have more proof of my authenticity as a sick person than most sick people will ever have?

It’s not because there’s any actual evidence that I’m faking anything.  It’s because bullies will be bullies, and they sensed this as a vulnerable point for any person with a chronic illness.  It’s because, I’m sure, a few of them have actually convinced themselves that they are on a righteous crusade against evil, and I am evil.  It’s because I have some people who, for reasons unknown to me, really hate me, and they thought this would be fun.

But it’s also because there’s a cultural norm that says that disabled people are all potential fakers until proven otherwise.

It’s because everyone is always looking for whether the wheelchair user can wiggle her toes, whether the blind man picks up a book and reads it with his eyes, whether the nonverbal person can say a few words here and there when xe’s under sufficient pressure and all the stars align just right.  It’s because people believe that we are all getting away with something.  That disability is about getting something for nothing.  That being sick means getting special privileges.  That everyone would fake illness to ‘play hooky’ from life, if there wasn’t constant vigilance against the possibility.

Governments love to spur on this kind of hatred and suspicion.  Disabled people in the UK right now are afraid to leave their houses because hate crimes have risen.  And the hate crimes have risen as a result of a media campaign saying that disabled people are exaggerating or faking their conditions in order to get benefits that they don’t deserve.  People are afraid of getting beaten up in public, because they’re being scapegoated by the government for the financial crisis that’s plaguing the world today.  And disabled people are always among the first to get scapegoated for such things.  We’re too expensive.  We need too many special privileges.  This always happens, and horrors follow.

According to Paul Longmore in Why I Burned My Book, the idea that you need to watch to make sure disabled people aren’t cheating on our benefits goes back to the English Poor Laws.  I wish I had my copy of his book on hand so that I could tell you everything he knows about the subject.  But basically it made it clear that there were poor people who deserved help, and poor people who didn’t deserve help.  And that we needed to always be careful only to be helping the right people.  And that the wrong sort of people would always be trying to take advantage of our charity and goodwill, so we must always be on guard.

And that attitude is what’s behind the suspicion of any disabled person who isn’t 100% stereotypical.

Speaking of which — you want to find a disabled person who is faking?  Find someone who has absolutely consistent abilities that never waver in any way, who is always able to do the same things, always unable to do the same other things, and those things never shift around.  She’ll be very much like the stereotype of whatever condition she claims to have, and won’t deviate in the slightest.  She will be everything you expect of a disabled person.  And that is why you will never find her so you might as well give up looking.

The people you pick on relentlessly as fakers are the ones who are generally actually more typical of disabled people, but less stereotypical.  We don’t have just one condition, we have two or three or four at minimum.  Our abilities are a moving target that we can’t always predict, let alone anyone else.  We seem to be able to do one thing but unable to do something else that we “should” be able to do if we could do the first thing.  We don’t obey any of the rules people have in their heads of how disabled people are supposed to be like.  And because of this we are vulnerable and because of this we are targets for relentless bullying, harassment, and defamation.

So a lot of us hide things that aren’t stereotypical.  Or we hide how bad things are.  Or we hide how bad things have gotten.  Or we try to play the role of a more stereotypical disabled person, hoping it will free us from bullying.  But then if we are exposed as having hidden anything, ever, or pretended anything, ever, then bullies have ammunition to accuse us of faking, and it all gets worse.  So we’re trapped in a double bind:  There is no way to be ourselves and escape ableist bullying.

I realize how much I have come to accept that I am an acceptable target, when I think of a good friend of mine and what would’ve happened (and it almost did, but for a twist of fate) if she’d met up with the same bullies I met up with at a certain point in my life.  It makes me shake with rage.  It makes me cry.  The very idea of her having to go through this makes me furious.  And I realize that I need to be just as furious that I’ve been forced to go through this, often with very little support and backup, for so long.  Because I matter just as much as she does, and I’m just as real as she is.

I have to say, though, that I have met people who were faking or exaggerating disability in order to manipulate people.  Very few, but I have met them.  And I understand that when done in certain ways, such actions can be devastating to everyone forced to be around them.  It can destroy trust.  It can destroy the cohesion of communities that are important for disabled people.  It can become an almost vampiric scenario where someone is draining time, energy, and money from people who can’t spare any of those things.  That isn’t what happens the majority of times that people fake things (the majority of the time, it hurts few to no people, actually), but it can happen, and I understand why people are changed by it, why they have trouble trusting after something like that happens.  I’ve been through it myself and it left my head upside-down for a long time afterwards.

But I’ve seen much more damage done to disabled people and our communities, by people who are overly suspicious of everyone for faking, than by people who are actually faking things.

In fact, I’ve seen irreparable damage done to disabled people simply at the idea that someone might think they were faking.  It’s an insidious thought that gets into people’s heads and won’t let them go.  It’s torturous.  I wouldn’t wish it on my worst enemy.  And I’ve seen it all but destroy a lot of very good people who’d done nothing wrong.  And these aren’t even people who were directly targeted for ableist bullying the way I have been.  All they had to do was see that the bullying happened, and that was enough to instill fear and self-doubt.  Many people with disabilities and chronic illnesses are dealing with so much self-doubt already, that bullying and witch-hunts simply pour gasoline on the fire.  I would not be surprised if some people who were already feeling they had no hope of being understood, had been driven to attempt suicide this way before.

My self-doubt is gone.

It was like a fog that kept me always looking in the wrong direction.  It made me unable to see myself.

I can see myself better now.  I am strong.  I am as real and genuine as everyone else.  I have done nothing that deserves being singled out and attacked.  I have far more proof of the reality of my medical problems than most people who are not being targeted have of theirs, and that tells me that I’m not being attacked because of anything I’ve done.  But I can see, clearly, that I am stronger than anyone who has ever tried to attack me.  Because I’ve now survived relentless attacks on my character, death threats, emotional manipulation, and head games.  Things they probably wouldn’t have weathered anywhere near as well as I have.

I don’t have any hope that they will stop what they are doing.  Because I can see now that what they are doing has nothing to do with reality.  No amount of proof is enough.  In fact they probably want me scurrying around trying to prove myself.  They enjoy that.  Because what they want is control over my life.  They want me to be scared and running around frantically trying to please them.  I’ll probably be dealing with this until they get bored or something, if that ever happens.

But there are things we can do to minimize the impact of people like this.

We can make it a community norm that it’s intolerable for people to bully each other about their disability status.

We can support people who are being bullied about their disability status.

We can support people who are not directly being bullied, but who express fears about whether their illness is imaginary, whether they are just somehow making things up without knowing it, that kind of thing.

We can make things safe for people to admit to feelings like that, without condemning them as guilty just because they’ve doubted themselves.

We can work against community norms that say it’s really important to catch disabled people “cheating” at being disabled.

We can make sure bullies know we aren’t listening to them, and we can make sure that their victims (both direct and indirect) know that we are on their side (because there’s nothing bullies love more than to make their victims feel as if we are alone and everyone is against us).

We can work for love and compassion and against one-upmanship, bullying-as-funny-entertainment, and ego.

There’s all kinds of things we can do.

And inside of ourselves, we can dismantle this self-doubt.  Because self-doubt of this kind, it’s what this kind of bully wants.  They don’t just want to make other people doubt us.  The real fun comes from watching us squirm, watching us doubt ourselves, watching us tear ourselves apart.

I for one will never tear myself apart over this again.   Because I know now, know in my bones, that this has all been real, all along.  I feel it every time I walk up and down four flights of stairs without my legs giving out or even getting out of breath.  I feel it every time I exercise without vomiting.  I feel it every time I do jumping jacks, run, skip, and do all these things I couldn’t do before.  I feel it in the fact that I never anymore get so exhausted that I need a bipap to breathe.  I feel it in every single change my body has made since starting dexamethasone.  This is what reality is.  Anyone who thinks otherwise can screw themselves, but you won’t get a voice on my blog, not to tear me apart, and not to tear anyone else apart either.  It’s what Dave Hingsburger taught me years ago:  I’m okay, you’re mean.  That’s all I need to know.

Blogging Against Disablism Day, May 1st 2014

When we died, we found each other.

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I was there
I was there and I felt
Your hands around my neck
Hands on my chest pushing me underwater
Tying me into the car and starting the gas
The hot poker
The bullet
The knife
I was there and I felt
Where is the air
Why isn’t my body working
Why can’t I get air
That overwhelming hunger for air
And then…
And then…

But I was there and I felt

The one person I was supposed to trust more than anyone in the world
And she abandoned me and spat my love back in my face

And I was there and I felt

The one person I never trusted
Even though everyone else said she was a saint

And she was a saint because of me
She was a saint for putting up with me
She was a saint…

…because the only person who would spend any time around me
the only kind of person who would ever want to
the only kind of person who could care for a person as
broken
difficult
damaged
destroyed
nonexistent
unfeeling
uncaring
noncommunicative
as me
would be a saint
wouldn’t they?

And since only a saint would take care of me
Then it could only be expected
It could only be expected
That a normal person
Could never handle
The burden
Of a person like me
(and therefore)
That it’s understandable
It’s understandable if
If someone would
Just want
Me to die.

My suffering was over, they said at my funeral
(When I even got a funeral, which was not always)
My mother was sentenced to
Five years
Fourteen years
Twenty years
Of living with me
(Even when she didn’t live with me at all)
She did not need any further prison sentence
For my murder

When I died, I stopped being separate
When I died, we found each other
We found each other
All the murdered disabled children
Cast out of life by those we should have been able to trust
And we held each other
And we became each other
Now we speak with one voice

Understand this first and foremost
No matter what you have heard about us
We loved
We could love
That we could love means
That we felt what you did
We felt it then
We feel it now
We know what evil means
Because we know love

Now understand this:

We were there
We saw
We knew
We understood what you never thought we could

And now we look you in the eye
And in the name of love
In the name of everything holy
In the name of the union we have found
(Which is nothing, nothing, nothing less than the deep universal love that They said we could never feel)

We say
Not
Ever
Again

Blogging Against Disablism Day, May 1st 2014

Feeding tubes and weird ideas

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My favorie BADD post: Tube-ageddon.

I haven't had much time to write anything here about the hell I went through getting my GJ tube. I had every indication for a GJ tube. I had gastroparesis so bad it was starting to affect my breathing, in a way that doctors said was likely to result in infection after infection until I died. From the emergency room onward, doctors were saying my best hope was to get a feeding tube.

Yet the pressure I got from doctors, while in the hospital for one of those infections, was to just keep getting infections, go home, wait to die. Most of them wouldn't say that outright. But some of them did. Some of them we confronted and they absolutely agreed that the only alternative to the tube was death — which could have happened to me by now, without the tube. But they still insisted on telling me not to get the tube, basically that I was better off dead than with a tube. We had to rally a bunch of people on the Internet to call the hospital before they suddenly changed their tune. My pulmonologist told me she could tell exactly when I started getting people calling the hospital, because the tone in my charts changed instantly to “let's get her the tube after all”.

Most people think of all feeding tubes as the same, all reasons for getting them as the same, and so they believe in false generalizations about their capacity to prevent lung infections, or indeed cause them. But they aren't all the same. They're all different, and the reasons for getting them are all different.

I have gastroparesis. That means my stomach is partially paralyzed. In my case it became severe before it was diagnosed last year and confirmed with testing this year. It's probably due to neuromuscular problems inherited from my mother, who has autonomic neuropathy among other things, a common cause of gastroparesis. My symptoms are similar to hers so doctors are assuming whatever we have is related. Anyway, it makes food remain in the stomach a long time. After awhile, this means that you can't eat very much and you drop a lot of weight. (I may still be fat, but they tell me by the end I was burning muscle.) by the end I was having trouble keeping down two small cartons of Boost a day, which isn't enough calories to live on. I was already on a liquid diet so there was no less food I could keep eating.

It also meant that the stuff staying in my stomach was riding up my esophagus again on gas bubbles formed by food sitting in my stomach for ages. I could feel it happening several times a day. I'd belch and food or bile would ride up with it. If this happened overnight, my bipap machine would shove the stomach contents down into my lungs from my esophagus. This began happening several times a week, and from January until March I had about five lung infections requiring antibiotics. I never stopped taking antibiotics, by the time one course was over I'd be on the next. Which is dangerous in its own right.

So when I showed up in the ER a few days after a CT scan showing what they called a “ground glass appearance”, they had no problem admitting me into the hospital, and even in the emergency room they were telling me if I wanted to live I needed a GJ tube. This wasn't news to me. They had been talking about a feeding tube since last fall, when one more nausea med added to the five they'd started me on, made me able to go home without one instead. I'd been discussing with my friends what kind of feeding tube served my needs best as a person with gastroparesis. And the GJ tube had always seemed like the best option.

A GJ tube is like a combination of a G tube and a J tube. Half of it goes into the stomach, which is a G tube. The other part goes into the first part of the small intestines, which is the J tube. The G tube gives you the ability to drain your stomach contents out into a cup, and dump them down the toilet. This means that if you do it often enough, you won't have anything building up in there and going up into your lungs. Right now, even bile and stomach acid can build up to dangerous amounts because of my stomach not emptying often enough, so I take acid reducers and I drain my G tube several times a day.

The J tube portion is the part that stuff comes in through. I eat through it. I drink through it. I get all of my medications through it. This means that nothing has to come in through my stomach. Which means we are bypassing the worst part of my digestive system. Not that the rest of my digestive system is wonderful. My esophagus is slow, my stomach is slow, and my bowels have been producing blockages since I was a teenager. But with liquid food going into my small intestine at a fairly slow rate (one feeding in roughly twenty four hours, I wasn't able to handle the twelve hour version without getting very sick) I seem to be able to handle things much better than when it was going in my stomach. I love it. It's so much easier than feeling horribly sick all the time.

I still take nausea meds, but half of them have been changed to PRN instead of daily. So daily I take Phenergan, Reglan (which speeds up my digestive system), and Marinol. And I can also take Benadryl. Lorazepam, and Zofran as needed. I used to have to take all six of those things every day, so this has really cut back on the amount of medication I need, which is good because every single one of these meds is severely sedating and it was badly affecting my ability to think straight. If I were still trying to eat, I would be taking every single one of those nausea meds at the maximum dose, and still wouldn't be able to eat enough to maintain my weight.

[Photo of me holding my tube. The J tube section is visible, the G tube is hidden behind my hand, and there's a little cloth thing from Trendie Tubies around the base, with owls on it.]

But I had to fight for this tube. Even though it was the only way to save my life. I had to fight against people who were certain I was better off dead. And I needed the help of a lot of people on the Internet, to do it. When I did get the tube, it was done without a working anesthetic. And even though the local anesthesia didn't work on me, even though I was yelling and screaming, they didn't stop to give me more, they just kept telling me that the Versed meant I wouldn't remember it later. Yeah right. It seemed like the entire process of getting the tube was one giant clusterfuck after another, and like people were making it as hard for me as they possibly could. (Later, when I had to get the tube replaced, we discovered that Propofol is the med, in combination with others, that really does the trick to keep me unaware of what's happening.) They treated me like a child, repeatedly expressing the fear that I would pull the tube out like young children often do, and blaming me when part of the tube got lodged inside me, probably as a result of over zealous physical therapy early on that was a clusterfuck in its own right.

But I got the tube and I couldn't be happier with it. I feel happier and healthier. After aspirating reflux several times a week for months, I haven't aspirated a single time in the month or so I've had the tube. My nausea is well controlled. My brain and body work better. Despite a couple complications since then, it's still the best thing medically that's happened to me in the past year. And I'm still alive, which even by now I might not have been if I kept getting infection after infection.

[The x ray showing the tube inside my body.]

Why did I have to fight so hard for it? I see two major reasons. One is that I'm perceived by medical professionals as someone whose life doesn't matter much, doesn't have much quality of life. I'm autistic, they read me as severely cognitively impaired, I am in bed all the time, they don't see that I enjoy living as much as anyone else does, and they make that decision somewhere in their heads without even noticing.

The other reason is the way medical professionals see feeding tubes. I've been trying to read the writing of nurses and doctors to find out their views on these things. Not just the horrible ones. The ones who snark at patients on their blogs. But the ones who think they're compassionate and sympathetic and good at their jobs. But in one area that makes no difference:

They all think of feeding tubes as the beginning of the end. They see getting a feeding tube as the first sign that your life as over. Possibly that you belong in a nursing home, as if anyone does. When I made out my living will, the first question of “Where do you draw the line where you want to stop living?” was whether I wanted to live if it meant I needed a feeding tube. They see people with feeding tubes as the first stop on the route to a living death. Other things they see that way are using a ventilator, having a trach, needing any sort of similar mechanical assistance to survive.

My friends see it a different way. They see me as some cool kind of cyborg, with the oxygen, the feeding tube, and the Interstim implant that prevents spasticity in my urethra, allowing me to urinate. They say the sounds my oxygen concentrator makes sound almost steampunk. But then all my friends are disabled, they see adaptive equipment as cool, and as a means to living, not a sign you're dying.

Medical professionals have been shown time and time again, to rate disabled people's quality of life lower than we rate our own quality of life. And yet time and time again, they see themselves as the experts on what our real quality of life is. One reason I try to keep my lungs and my guts in good condition is that as a person who is autistic and physically disabled, I know that if I ever got bad enough to need a transplant, I'd probably die. Because they would take one look at how I sound on paper, and they would decide my life wasn't as worth living as that of a twenty year old who wasn't disabled except for the effects of their lung problems or digestive problems. (Lung transplant is the end of the line for severe bronchiectasis. My bronchiectasis is mild, I'm working hard at keeping it that way. Transplant is also the end of the line for very severe gastroparesis combined with other gut problems. I'm hoping I don't get to that point despite severe gastroparesis. Given how hard it was just to get a feeding tube, which is the standard treatment when you start aspirating this much and being unable to eat even a liquid diet, I don't know that I stand a chance at making the transplant list should I need one.)

I also had trouble getting home. People were asking me if I belonged in a nursing home, or at least in twenty four hour care. I'm not sure why. It's not like it's hard to care for a GJ tube. It's unusual, but it's certainly easier than my old med regimen, which was truly difficult and time consuming. Now we just mix them up, put them in a syringe, and stick them straight into the tube. Easy. Eating is easier too, no more worrying I will throw up, and you only need to set up the food once a day and press a button on a feeding pump. But everyone has this illusion that it's incredibly difficult, and the VNA loves to take people with tubes and stick us in nursing homes claiming they can no longer care for us on the outside.

[The feeding pump on an IV pole with the food (Osmolite, low fat, high protein, no fiber) hanging above it.]

I still don't understand what the big deal is supposed to be. By the time you get a feeding tube, eating is really hard. Either you're having swallowing problems, or something is wrong with your stomach. In my case, my stomach was emptying so slowly that I was constantly severely nauseated no matter how little I ate, I was dropping weight way too fast, and I was aspirating reflux caused by all the food sitting around for ages. I was quite possibly going to die from repeated infections. How the hell is a feeding tube supposed to be worse than that?

I can't even begin to comprehend the fear of these things. I mean I literally can't do it. It makes no sense. It's all based in prejudice. It has nothing to do with the reality of a feeding tube.

I thought the worst part would be not being able to eat. The most I can do is drink a tiny bit of ginger ale, and I have to be very careful even with that. But I don't miss food. The feeding tube ensures that I am never hungry, and always have the nutrients I need. The only times I have ever started craving food, were two separate days where I spent all day at the emergency room unable to use my tube. Each time I came home and wanted to eat or drink something I didn't normally want to eat or drink. But when I'm getting food regularly, it's not a problem. I barely miss eating at all. I never even think about it. Even the vivid dreams I'd been having about all different kinds of food, all those months on Ensure, have gone away. My body seems perfectly satisfied with what it's getting, and it doesn't crave things unless I can't use the tube.

And it makes everything easier. Food is easier. Medication is easier. Absolutely nothing is any harder than normal. It's more like dealing with something easy and mechanical, than dealing with anything hard. We did learn the hard way to flush it with coke after every medication, because by the time there was a clog, you couldn't get enough coke in to dissolve it. So we are dissolving the clogs before they can even form, by leaving coke in for awhile after every single time we use meds. I've also discovered it's possible to reduce the pressure inside me — which can prevent the meds and water from flowing into me as easily — by relaxing my body, especially my rectum, and then everything usually flows in pretty easily. So there are a few tricks, but it has overall been much easier than my life was before I got the tube.

So what is so scary? I don't know. I can't find anything at all scary about this. It doesn't mean anything horrible. It means I'm alive. Being alive is a good thing. I don't fear death, but I only get one chance at life, and I don't want to die just because someone else has decided my life isn't worth enough to them. And so I'm very much interested in anything that will keep me alive longer, whether it's a feeding tube or any other “scary” device used for keeping disabled people around longer than used to be possible.

A lot of people I know have those devices, the ones that medical professionals think your life is over. Feeding tubes. Trachs. Ventilators. Catheters. Ostomies. Central lines. All those things that seem to scare people to death, even though there's nothing scary about them. They prolong life, not end it. And I'm furious at every single doctor who urged me to go home and die rather than get this feeding tube and get a chance to live longer. That is simply not their decision to make, and they were bound and determined to make it for me until I got enough people on my side to convince them that the entire world was watching the crap they were trying to pull.

I am going to work as hard as I can, to change hospital policy so that nobody gets pressured in the way I did. It's incredibly difficult to deal with pressure to die, when you're already sick and exhausted and have no energy to fight back. And they do it in sneaky ways, so that if I had been delirious or something, which I often am in the hospital, I might not have recognized what they were trying to do. My experiences are far from unusual, many disabled people have been encouraged to die rather than get a feeding tube, or a vent, or something else that would allow us to live. My mother, who has many of the same conditions I do, is going through a mess where doctor after doctor refuses to treat her or perform surgery on her, and she keeps having to go back to the Mayo clinic because they're the only ones who seem to be committed to making sure she can live as long as possible. And as a disabled senior citizen way below the poverty line, she gets the “your life isn't worth it to us” thing from at least three different angles. This stuff isn't unique to my life, the pressure to die is everywhere.

But most disabled people, like most people in general, prefer to be alive. Being disabled rarely changes that fact, not on its own. And the fact that anyone thinks we ought not to, that their pity goes so far as to be a death wish aimed at another person, is so disgusting I don't even have words for it. But they are the ones who are disgusted at my advance directive, which tells them to keep me alive no matter what. I can hear it in the sound of their voice when they ask me about advance directives. Advance directives are supposed to be about making your own choices, but the choice to live is the least respected among them. They would rather I not be here by now, rather I got my sixth, seventh, eighth infection until my lungs finally gave out. I refuse to give them the satisfaction. I love being alive and a tube doesn't change that one bit, in fact it makes my life better.